LNovember 11 is the International Day of Vulvodynia, a very widespread but little known disease. Here we tell the story of Bruna who also wrote a book to testify that “the vulva is not a funfair but a part of the body that can get sick”. Send us your stories, we will publish them
The first time I met her, in her apartment on the top floor of a building in the center of Bologna, she was standing leaning against the bathroom door. He had a thin face and two eyes that search inside you. With one hand she moved her brown bangs, with the other she rolled the wool sweater over her stomach. It was black. A dark, contourless ellipse from below the waist ran down the slender legs. “It is due to continuous heat to which I submit this area – he tells me – the only way to calm this hell between the thighs ».
The author of this article followed for a year a woman affected by vulvidynia, Bruna, together with photographer Laura Bessega. Here he tells his story.
Bruna Orlandi is forty-three years old and for ten years he has suffered from vulvodinia, a disorder that affects the vulva and causes pain, often disabling. It is an “invisible disease” because it exists but cannot be seen, and of which, despite its spread, little is still spoken. The same specialists often confuse it with other pathologies and for this reason women take years to obtain the diagnosis. It affects the body and with it femininity, affectivity and sexuality. “It is thought that the vulva is only a carrier of pleasure, a funfair in short – explains Bruna -. And instead, like any part of the body, it can get sick ». Teacher and author, she was the first in Italy to tell her story in an autobiographical book Nonetheless, free. The story as a therapeutic act (Giraldi Editore, 2018) to reassemble the pieces of his pain and support those who experience his own difficulty. Together with the photographer Laura Bessega I decided to follow her in her daily life for a long time, marked by moments of improvement and relapses. Because Bruna’s story is also the story of many other women.
We are collecting the testimonies of women affected by this disease who want to share their daily difficulties, in order to allow everyone (and everyone) to get information and understand. Send us your stories to the email address: [email protected]. We will publish them.
One morning Bruna heard a sudden pain in the lower abdomen, as if it were meat in the fire. It was April 2010, he was in the car with his partner and in a short journey he urinated up to ten times. Thus began his ordeal. »In the following months I slept only when the body fell exhausted – he says -. The urinations had gone up to fifty in twenty-four hours. I had moved to the sofa next to the bathroom. It pulled my abdomen, legs and even my face. I drank almost nothing, I walked with difficulty, every physical contact caused alertness in my nerves. In two months I lost even eight kilos ».
Over time he had stopped driving, taking the bus, traveling, going to the cinema and theater. He had had to quit his job and give up sexual relations because, he says, “every time I was sick, on average, for a month and a half. My partner suffered with me ».
Life had begun to revolve around a single pivot: the search for a diagnosis, between clinics, beds, tests, tampons and the network. “For a while I was bulimic with information, typed symptoms, obsessively reviewed diseases. I had entered cybercondria. I had become my disease ”. Meanwhile the pain in the vulva increased. “Needles, electric shocks, burning. The instinct – he says – was to tear it. I was crying because the exam results were all negative and there was nothing to blame. The problem was in my head, according to the doctors. ‘
The emotional carousel was circular and endless: despair, depression, illusions, moments of well-being, resignation, shame, fear, despair. The impact on daily life was enormous, until a specialist gave her pain a name.
Today Bruna is better, she is married and has a daughter. “I don’t know if vulvodynia can be cured, but I know that by finding the right path, you can also live well” he explains. He has a tattoo on his foot. It is a nine, a number that represents the hope that something will close to make room for something else.
Those affected are often ashamed of it, they do not talk about it. Bruna, on the other hand, has always had the need to tell her story. A percentage of the sales of her book the author has decided to donate to VulvodiniaPuntoInfo ONLUS, an association that supports women suffering from this disease and which has chosen 11 November as the International Day of Vulvodynia. Between the pages of the novel an unsettling irony, which makes its way into the tragic. “Can you imagine people’s expressions when I say: sorry, I have a great pain in the vulva! No, it’s not like saying I have a headache. But if I don’t laugh at it – he says – I die ”.
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